Embarking on a journey…CFS/ME style

[this is another post for the CFS/ME readers so feel free to tune out if you’re not interested]

Since being diagnosed with ‘aspects’ of CFS/ME (chronic fatigue syndrome/myalgic encephalomyelitis) when I was 17 I have lived in a pretty decent amount of denial.

I basically just stuck my head in the sand, ostrich style, assuming that the less I looked at it the less impact it would have on my life. I avoided telling people about it at all costs.

I have seen the severity of it; my mother is bed ridden from it and my sister has been extremely ill with it for ten years. I always cared about them and have done what I could, but have never taken the time to actually learn about the illness.

When I had to go to the doctor, his scribbled diagrams explaining cell function and digestion would just fly right over my head and I would just take whatever meds or supplements that were promised to help, until I decided they really didn’t do anything and would stop taking them.

But now that i find myself not with ‘aspects’ of CFS/ME but with the full blown version, I have decided to pull my head out of the sand and take responsibility for my own health. I have pulled out my old biology book so I can begin to understand cell function and those crazy diagrams from the doctor; I am now following some decent CFS/ME blogs to keep up with the latest research and reading pages and pages of journal articles and findings to acquaint myself with the world of CFS/ME and treatment. I am learning why I am taking each supplement and drug and deciding for myself to stick with it or not.

And its fascinating. And validating. like this:

“In CFS sufferers the drop [of cardiac output] may be from 5 litres lying down to 3.5 litres standing up. At this level the sufferer has a cardiac output which causes borderline organ failure.CFS – Mitochondrial failure

Yes. Borderline organ failure. No wonder I feel like passing out so often. Nice to remind myself I’m not just crazy.

Anyway. For you CFS/ME readers out there, will keep you posted with any interesting finds along my journey. Will start a series of posts related to particular symptoms, my experience, and research I can find regarding suggested causes and treatments for those symptoms (although chances are, you probably already know way more than me… 🙂 )

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